I have a deep dark secret

It is not that gluten-free eating saved my life (or that I used to be morbidly obese). It is not that I am still shocked that cancer sucks. It is not that my heart is still broken over Blondie.

It is also not that I am pregnant, nor am I engaged, switching jobs or launching a cool new project (ok I am sort of doing that).

I am also only sharing this with you because it is the reason for the delay in my second ebook. And because it caused me to almost quit blogging.

Here goes: I suffer from a rare, chronic, progressive and incurable neurological pain  disorder called Complex Regional Pain Syndrome (sometimes called Reflex Sympathetic Dystrophy or CRPS/RSD).

CRPS Sucks

It is widely accepted that this is the most painful condition that exists. And unlike child birth or the amputation of a finger, this pain is unrelenting. I don’t remember what it was like to not be in pain. (This is an excellent article about life with CRPS/RSD that profiles a blogger I follow).

I am in so much pain I cannot shave my legs. Or wear real pants (I am on a one woman quest to keep leggings in style, please help!). I haven’t gone for a pedicure in over 2 years because I am afraid of the nail technician touching my leg even if I tell them not to.

There are days when getting on the train is a traumatic experience and days when just walking on the treadmill results in tears of frustration and pain. I can’t swim in an ocean or a lake because the water is too cold.

There are times when the pain is so intense, I have no idea how the last 4 hours passed. I get to work in the morning some times and don’t remember even getting dressed. I say and post things on the internet that I don’t remember. This is what I refer to as pain brain.

How I got it

I blame a series of unfortunate events.

There was a car accident (after which I wasn’t supposed to be able to walk).

Then there was a running injury. A girl who wasn’t supposed to be able to walk again hurt her knee while running at a 9-minute mile pace.

Then there was the bruise from a coffee table that never went away. The pain just got worse as the bruise faded.

There is now constant fiery pain down my left leg.

What I do for it

Currently, I take 3 different kinds of medications, all of them controlled substances. I use a topical cream prepared in a special pharmacy that contains different narcotics and nerve inhibitors to help things like the breeze from increasing my pain level.

And I have a spinal cord stimulator. That means there are 2 wires floating in my spine connected to a battery in my back. I have a remote control that changes the frequency of an electrical pulse that interrupts the nerve’s pain response. I have to spend at least one night a week laying still to charge. Like a cellphone.

I have had over 20 nerve blocks, an epidural pain pump and countless hours of physical therapy. I have tried following an anti-inflammatory diet which had a negligible effect on my pain since I was already gluten, nitrate & preservative free. I have tried b12 shots and desensitization therapy. Some days I consider leaving the states for experimental treatments that are only available abroad.

Every day is a war with my body so that I can keep it from getting to the point where I am no longer able to walk. I swim because it is the workout that hurts the least and I have to keep using my muscles. I refuse to be 30 and in a wheel chair. I can stop it, so I will.

I spent 2 years holding it together after my diagnosis so that I could protect my mom from worry and shield Blondie from the possibility that I was damaged goods. I didn’t want anyone in my office to know because I just wanted to be normal-ish (having food allergies makes me different enough). Three weeks ago, I crumbled. I couldn’t hold it in anymore. This disease was winning because I had never shown up to the game.

Why it almost caused me to quit blogging

When I was finally ready to deal with this disease, I reached out to another blogger who suffers from this condition on twitter. And I mentioned that I understood being chronically ill. And that some days I feel like an 80-year old with all the medication I have to take. That was my biggest mistake. My secret was out. The world could see that I take medicine. I should have sent her a private message, and then I wouldn’t be sitting here writing this post.

People forget that they are people when they are online. They can act as if their way is the only way. Or they will be just plain rude.

It is a very vulnerable position to be in, letting the world know what your world is like behind the curtains of the internet.

This is not like the people who think I am wrong for enjoying distilled alcohol on a gluten-free diet. Or like the comments I sometimes get about how I am not a true gluten-free person because I use grains and dairy. This was more personal than that.

A complete stranger felt they could recommend that I change my diet and go off of medication and I would be cured, because their diet cures everything and western medicine is evil.

Evil. 

The few things that are helping me hold on to a normal life with a 9-5 and a crazy fun set of hobbies and friends are being called evil by strangers on the internet. Medicine helps me people. And I would appreciate it if you would respect my decisions to trust the doctor I am currently seeing.

I was offended. I was hurt. Medical decisions are personal, just like food choices.

I am telling you that I am sick, not for your sympathy, but so that you can see how judging my treatment choices like that hurts.

Just as you judging me for the food I eat is inappropriate (Shauna wrote a great post about this), so is telling me that my diet is the cause of the pain. I did not make any of these choices lightly. They are the fruits of a decision making process that involved multiple opinions, referrals and hours of research. I have to believe that there is hope for me, and I have to believe that my doctor knows how to treat this. Or else there is no hope left.

I am not ready to go there yet. I am 28. I have a life to live. 

I envy people who’s lives can be turned around by changing their diet. My friend Amie is proof that food is powerful medicine and can be a horrible poison. Heck, food changed my life. But this time, it isn’t so simple.

I am using food as medicine, but it can’t replace all of the medicine prescribed by my doctor. I have increased my intake of anti-oxidants and b vitamins. I have decreased my caloric intake. I eat whole foods. I avoid chemicals as much as possible. I go to the gym and fight through the pain.

On the other hand, cupcakes have theraputic properties. So I am not going to give those up completely. Ever. Sorry.

I have an excellent medical team. My allergist, neurologist and anesthesiologist (pain specialist) are working with me to help me build a healthy and full life. And I am going to keep taking medicine that makes a positive impact on my quality of life.

If a friend of yours suffers from a chronic illness, do not offer them unsolicited advice. What they need is support. A shoulder, an ear. Not a lecture. 

And the ebook?

A major flare left me unable to finish photographing cakes and formatting the book, I am postponing the release until August 15. But you won’t be disappointed. Until then, there is still the gluten-free cookie ebook!

So the project I mentioned

If you follow me on Instagram, Pinterest, or Flickr, you have seen parts of it. Three times a week, I will be posting an image with a quote or illustration of something positive or inspiring that speaks to me. It is part of a quest in the online game SuperBetter. (I will write a post soon about how this can be an incredibly useful tool for handling a celiac / gluten-sensitivity or food allergy diagnosis).

In conclusion

It is time that we all accepted each other and their decisions regarding how they take care of themselves.

I might tell you that from experience changing my diet changed my life. And food is powerful medicine. I might want to hear from you how when you went dairy free a fog lifted that you didn’t know was there. I want to know that how you eat makes you feel good. Because how I eat makes me feel good.

But I am sick, and the treatment plan I have chosen is not up for discussion. Now, let’s make some cupcakes, shall we?